Bits and Pieces; Updates on Campath/Lemtrada, Health Care Reform and the National MS Society.

If you have been following this blog because you or a family member has Multiple Sclerosis you may know about the Sanofi takeover of Genzyme. Alternately, if you are one the many pharmaceuticals or investors or PR and advertising firms that visit us, you already do know that Sanofi completed the $20.1 billion buyout of Genzyme.

Which brings us to Campath (acquired from Bayer by Genzyme) now known, or trying to be known, as Lemtrada. We have written about it here because of the shameful desire to increase the price of a relatively inexpensive cancer treatment to $60,000 per year for Multiple Sclerosis treatment.

It is NOT YET APPROVED for use by the FDA. Campath/Lemtrada is still in clinical trials. Here is a link to the latest in their Clinical Trials.

At one point, Genzyme was giving Campath away for compassionate use in cancer patients. This was done by Genzyme to erase the yearly sales figures so that when the same drug rolls out (when approved) the $60,000 per year price sticker for Multiple Sclerosis won’t have a sales comparison number–of something much, much cheaper. Redefines the whole meaning of compassion, doesn’t it?

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Health Care Reform:

While the Affordable Care Act is not yet a law–we still have until 2014 for the whole thing to go into effect–the GOP is back to using their favorite catch phrase, “death panels.”

Here is a link to an article in Talking Points Memo about Rep. Phil Gingrey (R-GA) raising the dirty spectre of death panels and rationing yet again. Just an FYI, Rep. Gingrey voted to abolish Medicare. I think the good doctor should know better than to espouse what he does, but here’s the quote:

“[U]nder this IPAB we described that the Democrats put in Obamacare, where a bunch of bureaucrats decide whether you get care, such as continuing on dialysis or cancer chemotherapy, I guarantee you when you withdraw that the patient is going to die,” Gingrey said. “It’s rationing.”

We’re the only democratic and industrialized nation in the world without a universal plan; a plan where anyone can buy into a risk pool and get themselves covered no matter what. We all get sick, it’s part of the human condition. It’s how we treat ourselves that defines our society.

My husband now, having been without insurance for six months, can finally apply to the new high risk pool–thanks to the Affordable Care Act. We ask the representative from Georgia, “What should we do, Dr. Gingrey?” Repeal the health care law like you and every member of the GOP want to do so that my husband (and all other Americans like him) will go without health insurance and health care?

Crying tort reform over and over, as Dr. Gingrey does, isn’t going to fix the system, but considering that the good doctor has himself been sued for malpractice several times, it becomes obvious why he repeats this so often. And why he’s introduced legislation into Congress that would limit damages for pain and suffering from malpractice cases. See H.R. 5 of the 112th Congress.

Dr. Gingrey has this to say about health care reform:

“Just one year has elapsed since the government takeover of our healthcare system and Obamacare has done nothing but create hardships for Americans and place burdens on businesses,” said Congressman Phil Gingrey. “Since its passage, state budgets have been crushed by rising Medicaid costs, businesses have struggled to keep their doors open due to onerous new administrative and tax burdens, and American citizens are being threatened with rising costs and less access to quality care. As we move forward in pursuit of a full repeal of Obamacare, we must stay committed to replacing it with meaningful, cost-cutting reforms that will improve health care, lower costs, and put Americans back to work.”

Government takeover of health care? A proven lie.

If government is so bad, why does Dr. Gingrey want to use government to sharply cut medical malpractice awards? Won’t the free market just sort things out on its own?

But if Dr. Gingrey is speaking about the government creation of a high risk pool to help my husband and all Americans with pre-existing conditions get access to health care by purchasing insurance that will cover them, then I suggest he re-read his Hippocratic Oath.

As for tax burdens and small businesses, small businesses love the Affordable Care Act because they get tax breaks. And read more here, from Fox News.

Are we being threatened by rising costs? Yes. Why? Because Dr. Gingrey and his GOP ilk refuse to expand Medicare to Everyone. A national health plan that would compete for customers may inspire the private health insurers to actually produce a good product. Competition does that. As it is now, the private health insurers have zero competition.

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Now onto the National Multiple Sclerosis Society:

We got a flyer from the National MS Society the other day about their teleconference series that, “is designed to support individuals with MS through the continuum of their work experiences; from staying employed, to retraining and on to post-employment options. Understanding how to access vital resources will help individuals make the best choices through any stage of their workforce journey.”

With all the money the National MS Society takes in (and spends), this piece of writing just sent me over the edge as it purports to say something without saying anything at all. They paid for that with your donation dollars. And it gets worse:

Applying Through Your Employer’s Long Term Disability Benefits When MS Progresses

Featured speaker Lisa Kantor, LLP from Kantor and Kantor will share her expertise as an advocate who has successfully represented people in Employment Retirement Income Security Act (ERISA) benefit claims for over 18 years. If you have MS and Long Term Disability Insurance through your employer, you will want to know how to apply for and access these vital benefits.

Let me just begin by saying that the whole reason I’m here writing this, the whole reason this Foundation exists is because of the way my husband was treated both by his Long Term Disability insurance carrier, CIGNA.

He was denied his benefits by CIGNA. Twice. We had no where to turn for help, including the MS Society at the time.

This sort of teleconference series makes the National MS Society look good, but doesn’t really help. And with all the money they have, imagine what they could do. They could start by lobbying Congress to fix ERISA–that would go a long way in helping not just those with MS but all who have been denied their benefits or who have been mistreated by their health insurer.

Listening to Ms. Kantor may be helpful, she may even gain a few clients from this teleconference, but she can’t help you “apply for and access these vital benefits.” She simply cannot and that has nothing to do with Ms. Kantor.

See, one cannot actually access their long term disability benefits. I wrote extensively about that over at Illness and Insurance Hell.

Your insurance carrier starts the process while you are still on short-term disability; they will insist you apply for Social Security benefits and prove that you have been through that process or else they’ll deny your claim. They will even offer you help with one of their attorneys to make sure you go through the Social Security process.

To make matters even worse, they will obfuscate the truth (that’s called lying) in the face of medical evidence; they make things up. And when they are threatened with legal action, they send photographers (bad ones I’d like to add) to your house to photograph you and your family. My husband has lesions on his brain and spinal cord, could the guy with the camera, snapping away at us, somehow disprove that?

Then, after all of that, they all attend conferences with federal judges (among others) to figure out how to defend against ERISA claims. Anything not to pay a claim.

Which brings me back to the Affordable Care Act, the Ryan plan to abolish Medicare and the GOP still trying to get rid of health care reform.

I ask this: If the GOP succeeds in repealing health care (doubtful) but say they do, then the provisions in the law that help people, that stop lifetime caps, give seniors free preventative care, that fill the Medicare donut hole, that stops insurers from retroactively cancelling your plan, that gives Medicare drug discounts–if the GOP stops all this then what good is that $8,000 Ryan Voucher?

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Analyzing Patient Assistance Programs for Multiple Sclerosis: AVONEX and AVONEX Services

As part of our continuing efforts to highlight all the patient assistance programs available through the pharmaceutical companies that make the disease modifying drugs for Multiple Sclerosis, we continue with AVONEX. The price of AVONEX is approximately $3,000 per month.

What we want to know about these programs is:

  1. How easy is it to apply?
  2. What is needed to apply?
  3. How easy is it to receive the assistance?
  4. Do they really work in terms of helping MS patients with financial assistance?
  5. What is offered?

AVONEX offers a program called AVONEX Services that covers a co-pay program and an access program. The only way to apply to these programs is via a phone call to them at 1-800-456-2255. There is no online application. From the phone call I placed to AVONEX Services, it seems that a prelimary phone interview is the way to get things rolling, where certain information is taken from you and then turned over to their financial assistance team. You must have a prescription for AVONEX to begin the process.

If you have insurance and cannot meet your co-pay, their financial assistance team will do insurance research to see if you do have coverage for the drug. If you still cannot afford your co-pay, a 2nd screening is done by the AVONEX Services financial assistance team. Eligibility, I was told, is done on a case-by-case basis.

I did not receive a clear answer on what the qualifiers are for the programs and I have asked them to contact me further so I can post them here.

As far as being underinsured or uninsured, AVONEX Services offers something called their access program. Again, details remain sketchy but I came away from my conversation with AVONEX Services with these points:

  • They do help those who are on government assistance.
  • They do help both new and current AVONEX users.
  • They do offer a temporary assistance program, of up to two (2) years, to get those who need AVONEX free of charge.

Beyond that, I am not certain on a few other issues. For example, it was said several times that “they partner with financial institutions,” to help you with payment. When asked what financial institutions they partner with, I was told that information comes from the financial assistance team. Again, it is unclear to me what that means.

Sending MS patients to charitable organizations to get their AVONEX was also mentioned, but that was it; it was mentioned with no further details. Why they would mention a program to send patients to charitable organizations when they have a program in place for up to two (2) years, leaves the overall impression of gaps within their patient assistance program. Again, I am waiting for more details from AVONEX.

I finally inquired about the Affordable Care Act and the impending six (6) month waiting period to apply for the new high risk pools and what, if anything, was Biogen doing about this. Are they prepared for this and would they be willing to begin a program that will get this group of people their drugs for free? I left my contact information and I await their response.

AVONEX is manufactured by Biogen Idec who also make Tysabri. Stock quote for Biogen can be found here.

Analyzing Patient Assistance Programs for Multiple Sclerosis: MS LifeLines and Rebif

As part of our continuing efforts to highlight all the patient assistance programs available through the pharmaceutical companies that make the disease modifying drugs for Multiple Sclerosis, we continue with Rebif.

What we want to know about these programs is:

  1. How easy is it to apply?
  2. What is needed to apply?
  3. How easy is it to receive the assistance?
  4. Do they really work in terms of helping MS patients with financial assistance?
  5. What is offered?

We finally got some good news and welcome answers today when we spoke with MS LifeLines. For those of you with MS who are uninsured or underinsured, you can and do receive help. The application process must begin over the telephone and can, most times, be completed by phone with no waiting period. There is no online application. The phone number for MS LifeLines is 877-447-3243.

You must have a valid prescription for Rebif to start the process. Rebif costs approximately $2800 per month. More drug information can be found at Destination Rx.

MS LifeLines offers three types of assistance, including help for those who are currently taking the medication. The chart below is taken directly from MS LifeLines and explains the assistance for those who are newly prescribed and those who are currently taking Rebif.

How to get started on MS LifeLines Access Made Simple

I asked if MS LifeLines was prepared for the fact that many will be asking for assistance due to the stipulation of going without insurance for 6 months prior to applying to the new high risk pools and indeed, could they be receive Rebif at no charge? The answer was yes, and yes, they already do offer assistance of free medication, up to one year, for those without insurance. MS LifeLines also stressed to me the importance, they feel, of making sure those who do need Rebif and cannot afford it, do get help, including the Medicare Part D “Donut Hole.”

Rebif is made by EMD Serono, Inc., an affiliate of Merck KGaA, and by Pfizer Inc. Stock quote for Merck here. Quote for Pfizer here.


Analyzing Patient Assistance Programs for Multiple Sclerosis: Shared Solutions and Copaxone and Update*

The Foundation will be highlighting all the patient assistance programs available through the pharmaceutical companies that make the disease modifying drugs for Multiple Sclerosis.

What we want to know about these programs is:

  1. How easy is it to apply?
  2. What is needed to apply?
  3. How easy is it to receive the assistance?
  4. Do they really work in terms of helping MS patients with financial assistance?
  5. What is offered?

We started first with Copaxone, a daily injectable made by Teva.

Teva Neuroscience, has a patient assistance program called Shared Solutions. I called them today to find out what assistance they may offer in helping MS patients pay for Copaxone, especially those who do not have insurance and specifically, the group of people who must go without insurance before first applying to the new high risk pools.

The answers I received were disappointing and upsetting.

First, the cost of Copaxone per month is, according to Shared Solutions, anywhere from $3500 to $3700 per month.  Not sure why there is a $200 discrepancy as that was not clear to me.

Second, they do not offer an online application process, you must call and request an application. Now if you want to apply to be part of Team Copaxone (a marketing arm for Teva) then you can apply online. More information is here.

But back to Shared Solutions. The terms of acceptance for their financial assistance were not given over the phone as they had to look at each application.

Next, they only offer a $50 copay to help you if you are insured with a group or private plan. Knowing full well some people receive paltry co-pays on their prescription drug coverage, the $50 copay assistance is insulting. And considering the daily cost of Copaxone at $3500 per month which comes out to $117 per day, the copay does not cover the full cost of one injection!

Also, they do not help anyone who receives government assistance as that “is not our company policy.” That was the answer Shared Solutions gave me when I asked why they do not help those who receive government assistance.

Disappointed with the answers I received, I did request that Shared Solutions contact me regarding implementing a program to give out the drugs for free for those who need them for the six months before this certain group of MS patients can apply to the new high risk pools. This Foundation would be willing to work with Shared Solutions to get MS patients their much-needed therapies. It’s in Shared Solutions court right now. Here is the Copaxone link and the link for Insurance Assistance for Copaxone.

From their website:

If you do not have insurance or if you need help paying for COPAXONE®, Shared Solutions® can refer you to other financial assistance programs.

And so it was I was referred to their other financial assistance program, Assist-Rx. Assist-Rx has taken over for NORD. While they were as helpful as possible, Assist-Rx has been overwhelmed with applications and is simply at a standstill. Their number is 877-422-4412. Being inundated with applications, as I was told by Assist-Rx, obviously proves the need for payment relief and the need for more coordinated efforts on the part of MS patients. This Foundation is willing to step-up.

But we have another obstacle. Coverage for prescription drugs is left up to the health insurers and there are no provisions or regulations to help the consumer, even the ones who are well-insured, to make sure they can get affordable coverage. More information about the soaring costs of these drugs and their effectiveness here, here and here (this last one is a discussion but we too had the same reaction–how much less would it cost if they stop with all this expensive to-make and to-mail CD, DVD, calendar and other marketing promos they send out?)

So, what happens when you do not have insurance to cover all or part of your Copaxone, or your COBRA is about to run out and you still don’t have health benefits? What if you do not qualify for Medicaid or you are too young for Medicare? If you fall into one of those groups, then you have no place to turn.

This Foundation aims to change that.

Teva stock quote can be found here. More Teva information can be found here.

*Update, November 8, 2010: Shared Solutions contacted me today and we spoke about their patient assistance programs. They were unaware that Assist-Rx was overwhelmed with applications and said they would look into it further. They were not certain what, if anything, they would be doing regarding the Affordable Care Act and the 6-month waiting period prior to applying to the new high risk pool. In fact, I was told they were not fully certain of what the new law would bring, so I explained the guidelines for the high risk pool. I was told that my request to supply MS patients free of charge during this period, would be looked into by the people at Teva who can make those decisions. Also, please know that they do offer more extensive co-pay assistance than $50 per month, you must ask when applying.